Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair. I am on FEC100 X3 followed by Taxotere X3. My dosage unfortunately is not a guaranteed success. I am 40 days out from my first treatment and will have my third June 17. So far I have thinned but have not required a wig. I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there. All in all, I am pleased to still have a good covering. If you are using or have used the Cold Caps, I would love to hear your experience. Take care, Candy

Does the shedding ever stop???? I am 3 days PSC so 2 of 4 rounds of tc done with Dignicap. I have so much hair coming out I am probably at the 40% mark now and have bald spots if I part wrong and on one side. I am being so careful but if the shedding continues through the next weeks until I hit treatment three I'll have little hair left come last treatment. If it stops or slows down now I'll be ok.

With AC, shedding usually starts around day 21 so expect that. I just finished my 4th DD AC last week - have lost about 10% of my hair so far which I think is pretty good for AC. Taxol x 12 coming up so who knows how that will go, but impressed so far with Penguin Cold Caps. Since the Taxol will be smaller doses over a longer period maybe less shedding. I have seen some of the ladies with DD Taxol report heavier shedding during this but I am sure other factors played into it. Anyway, good luck with your caps!!

I am pleased to report that my last round of chemo was yesterday. The cold caps are halfway to Texas right now!

My question today is: how soon after chemo did you start using ointment on the thin areas to get the hair growing back faster? What did you find that worked well? I have read on here about castor oil, peppermint oil, and my sister reminded me about a salt scrub. Anything else?

Summer 2016- Hurray on the successful wash after the highlighting. This is great information so I can see how long I should wait.

CinceyMom - One thing I do everyday to help with the greasy hair and styling is use corn starch in my hair. I apply it gently with my fingers and it absorbs the grease. I wear baseball caps because of the possibiilty of sunburn or if it is windy. I also have a wide brimmed straw hat for when it is hot - does not work well in the wind, though.

MJPow - darn that nausea! Not sure what the laws are in your state, but what about medical marijuana? Tell the doc no more mickey mouse medicine. Time to get serious. lol! (Hope I did not offend anyone)

gokale- I made the mistake of putting too much argan oil in my hair for regrowth. It highlighted the bald! Took three washings and a bathtub dunk in warm water to get it out. I think not a good idea to cause a need to re-re-re-wash..

Hi all,

I'm a month post chemo. I have not been losing much hair aside from the argan oil disaster I caused. I lost most of my hair post AC. I started going very bald on top about two weeks after my first Dose Dense taxol. Hair started falling in large snarls all day long for about three weeks straight. My first Dose dense taxol was the worst for side effects! On day two, after first DDTaxol, my hands and feet were on fire swollen and hurting. I used rx diclofenac anti inflammatory cream on the hands toes, it helped. Even the carpet hurt my feet.

I think that first of 4DD taxol round caused me to go thru all my hair shedding early. I attribute my 'almost' no shedding PFC to these circumstances. I have very little hair but I'm still getting away with toppik and hats. Great news for me! with all my hot flashes the hats just make me so hot. At four weeks PFC I'm seeing soft grayish baby hair coming in. Cold caps are working for regrowth! If you can, really try to Keep your hands and feet on ice for taxol! I still have some annoying neuropathy!

had my neo-adjuvant surgery yesterday!,,(neo adjuvant-cancer surgery after chemo instead of before). Had my breast and nodal cancer suregery, and a boob lift, and port removal all at once at Stanford. all went well. I had a lumpectomy bilateral breast lift and 10 axilla nodes removed. Pain level and discomfort not bad at all. No drains at all! I think (hope) I saved a lot of nodes with my neo-adjuvant choice. Surgeons were initially talking about 20 plus node removal plus nipple removal last November. I ran the other way! Landed me the chemo first option! no difference in neo-adjuvant outcome we learned. Advantages We got to feel the chemo shrinking my large palpable almond sized nodes down to small peas! I also got to ski all winter thru chemo because I had no surgery to keep me from bounceing boobs and using my nodal arm. Very nice to get to see the chemo working like it did.

Stanfords surgeon Dr Amanda Wheeler so far as I can see is a super talented specialist in breast suregery. I interviewed three surgeons! two wanted to remove my nipple and take all the nodes. I kept nipple and a lot of my nodes. I don't have my pathology back yet so not confirmed. Wish me luck for clear margins

I had a Savi Scout instead of a surgical guide wire! Savi scout Can be put in weeks before surgery can do it in your pre surgery mammography and sonogram weeks before hand. Not much pain or discomfort with it. And that surgiacal wire would have been aweful for the waiting hour(s)in pre-op prior to suregery. Ask about savi scout!

ykh, I would definitely take several Ibprofen's before cold capping! My first time using the cold caps, I thought I was going to scream because they were so cold on my head. But after several minutes, I got used to the cold, and was able to continue with them without any problem. You just need to get through those first five to 10 minutes!

Mquara----Hi. I used Dignicap for my 4 rounds of TC. I had shedding about 19 to 20 days after 1st chemo. I had shedding all the way to 1 month PFC. I had extremely thick hair before chemo. After, I have about 50% of my hair left and darn happy to have it! 2 months PFC I had my hair trimmed and highlighted and after this wash...No Shedding :) The bald spots (top of head and temples) all have peach fuzz and are filling in nicely. Now if my brows and lashes would return....

Ykh, I was taking Ibuprofen because I didn't want to burden my liver with Tylenol in addition to Taxol. I also took Xanax before cold capping. My premeds had Benadryl, so between all these drugs I was sleepy and numbed to the cold.

My hair is hanging in there Wednesday will be AC #4 I know they say no braids but it keeps my hair from tangling.

My hair definitely has a different feel and I'm hoping it stays for my 12 taxol 🙂

Gokale- medical marijuana is legal here my friend took me to get edible chocolate it tasted like I was chewing on pot smoke so yucky lol but it did help alleviate some of the nausea! Just one more of this AC!!! Ugh so excited to be past it!

Ykh- I tried the ibuprofen before and it wasn't strong enough for me. But many seem to have luck with just the OTC. Meds. I take a pain pill and Ativan hopefully you will fly through it with ibuprofen

I'm still losing hair daily. I am almost 6 weeks post final chemo (6 weeks minus 3 days). These are pictures 144 days after chemo started 11/28/2016. I think I'm down to 10% of my hair. I'm hoping the loss stops soon, I don't have that much more to lose. I bought Toppik and have used it a couple of times. If I had to go somewhere nice I would use it. Lately I have been wearing a bandana (or sun hat) when I go out.

Also my hair is in such rough shape, it has no shine, it looks crumpled all the time. I wash once a week with Acure and comb once a day. I also use a kids detangling spray everyday before I comb. I need this because my hair gets so tangled when I keep it down all day and then sleep on it. I tried Acure conditioner (the one for healing hair), but it took so long to rinse it out --- like ridiculously long, that I stopped using it after 2 weeks. Now I just use hair detangler.

Hanging in There, if the pics you posted above are current, you sure look like you have a lot more than 10 percent of your hair left! Hope your shedding ends soon. Are you using satin pillowcases? I still use them 4-1/2 years later. They might help with your tangling issues if you're not already using them

MJPow, looking good! Cold caps work really well on weekly taxol alone, anecdotally much better than with dose dense taxol, so hopefully your good results will continue.

Fastgirl - Ya-hoo! on the big finish of chemo. Get those caps outta there!

MJPow - lovely pic! Not only does your hair look nice, you also look vibrant - not run down.

Hanging-In - You look great! That 10% looks pretty darn good. As far as you being able to comb your hair after your surgery - maybe the nurses at the hospital can give you some tips. They must encounter similar questions all the time. As far as you losing hair daily still, do you think you're losing less and less?

I bought some castor oil with rosemary to rub onto my head. I am going to try it tonight. I hope it smells okay. I found it at a natural products store, Garners Natural Life. I like that place; I am quite frank about what I need and why and the gals that work there are so nice and helpful. They are so young, yet professional.

MJPow--Wow, your hair looks great!!! Will be sending you good wishes throughout the next round with Taxol.

Hangingin--I know that photos can be deceiving, but I agree with GoKale--it looks like you still have lots of hair! I'm sure it is relative to where you started, but I think my hair was medium at best when I started this process, so it looks like you still have a good head of hair. Maybe a style consult would be helpful? I purchased a wig as my Plan B when I first started. The shop is attached to a hair salon, so some of the stylists are knowledgeable of working with women who have lost their hair through chemo or other reasons. If you could find a similar situation, it might help you feel better about what you have, going out, etc. Thinking of you!!

Elastogelgirl -- so happy to hear that your surgery is behind you and that it was a better process than you originally thought. So sorry to hear that you've had so many SE's, but here's to all that new growth you are having!

ykh. Agree if you can get thru the first 10 min you get used to it. I tried Tylenol but got no relief. The best thing was Ativan for anxiety. In my case I got more anxious the longer I had chemo. I was much more anxious for the third chemo than the first. Probably because I knew what to expect. Cold caps weight a lot. Rest your head back on the lazy boy lounger chemo chair. Sometimes I got a real bed at the chemo center and that was even better. Your neck is really going to hurt from the weight

Thanks for the comments on my hair. It may sound like I'm fishing for compliments but what I am doing is recording what my hair loss has been like for what I understand is the worst chemo regimen they can give anyone.

I had dose dense A/C every 2 weeks for 4 times, followed by dose dense Taxol every 2 weeks for 4 times.

I used Penguin Caps knowing it was a gamble. I started out with VERY think wavy hair, and I think I would not have any hair today had I had thin hair to begin with. So hopefully others will not lose so much of their hair and for this long. Still waiting for shedding to stop. I have surgery on Wed. April 26 and would like the shedding to stop in the next week or two. I don't think I have any new hair growth yet, besides a little at the top of my forehead, which I understand comes in first.

Hangingin, from what I can tell, no one is going to know you're been through chemo. I think your hair looks pretty darn good for all the chemo you've had. I know to you it's different, but I'm not even seeing thinning. You're a real success story for AC+T!

How did/do you wash your hair? Penguin recommends to dilute a capful of shampoo in a bowl of tepid water and pour it over your head. I am not sure if I Iike this method. Also, do you use a conditioner? My hair is curly and can be tangled easily.

Almost all of my hair that falls out has a white bulb at the end. So this morning, I wondered if this meant these strands would never regrow so I googled it. I can't find anything that is from a reputable source - but it sounds like the hair will regrow if the bulb comes out - will just take a while. So the bulb is not the root and the root is still there. Can anyone comment on this?

Hanging In - I did not mean to diminish your concern. At 6 weeks post chemo, I believe your hair looks great. I read that it takes 8 weeks to get all the drugs out of the body so maybe your shedding will end soon. Best wishes to you on your upcoming surgery.

Elastogelgirl - no drain? Amazing! I had a drain for 2 weeks after a lumpectomy. So glad your surgery went well.

Hangin - thanks for your update and your hair looks normal and should provide comfort to those of us having the same protocol.

YKH - I used Penguin and just took a shower but turned water to cool when washing, rinsing and turned the pressure down to a minimal flow. I gently rubbed the shampoo on the top of my hair. I took 2 Tylenol and an Ativan before each capping session. First 5 minutes were cold but got through it.. good luck.

MJPow - You look so good.. pretty girl!

Congratulations to those who finished!

I am 12 weeks PFC and as a reminder I had AC&T infusion with DD Taxol. I lost 75% of my hair but never had to wear a wig (shopped for one) and didn't have bald spots. Just all over thinness. At 3 weeks I cut 1 1/2 inches off. At 8 weeks PFC I cut 2- 3 inches off. I had an ombré with brown on top and golden blonde on the bottom. I cut all the blonde off. I did not experience additional shedding when cutting my hair. My shedding actually seemed to decline.

Yesterday I saw a color specialist who has experience with PFC hair. She colored my hair a richer light brown, my natural light brown is mousy. She also balayaged some blonde highlights. She said my hair is strong. It would hardly lift with the highlights. She said the key to coloring at this point is using OlyPlex. I had read a lot about it and it has amazing reviews she had me sit with it on my hair after coloring for awhile. My hair is shiny and has a little more, not a ton, body. I have TONS of regrowth all over my head 3 inches.. my hair grew during treatment. My hair is not normal to me and someday I'll go back to my golden blonde but no one would know I went though anything.

My eyelashes are back, so long and full and last week I got my eyebrows conservatively waxed and plucked. Who know what will happen, they may all fall out again but just being normal for a few weeks helps.. I have used Latisse every night since PFC.

Most important for me.... I finished 35 rounds of radiation last Thursday.. The redness has almost disappeared. My symptoms during radiation were redness and nausea. I lost 12 pounds during radiation.

This post is to help those starting, in the middle or ending, to know my results in this experience.. I feel good and the numbness in my feet is almost gone. I still like to take a little nap everyday but I have done that my whole life ☺️. Fight on ladies and happy hair days!

Congrats GoKale!! Let the healing begin! I used Castor oil on my brows and lashes--still am but haven't tried anything on my scalp yet. I just ordered some vegetable based hair color online. I'm just scared to do anything to this hair. I washed it this morning and felt I got a lot more than I should at this point. I'm almost 14 weeks PFC.

ykh--I bought Tylenol Migraine for the cold cap. (Also took xanax on those mornings).

Hanging--I know what you mean about losing a lot of hair. Upon looking at me, no one can tell but when I wash it or grab it in a ponytail, it's 50% less than what it was. It is STILL coming out with combs. If a normal person loses 120 hairs/day. I feel I'm 100 more than that. Not horrible, but still more than I would have thought for 3 months out. That is why I'm holding off on coloring. When I feel my hair is strong enough, I'll do it but man, my grays are crazy at my part. But as I always say, gray hair is better than no hair! But you look great to us. That's what we did this for, right? To look "normal". I know it's not YOUR normal, but when you see the alternative, you realize all is good.

Luvmyys-- Congrats on being done!! I'm 2 weeks ahead of you so it's encouraging that you colored your hair with no problems. I had 4 rounds of TC, which is less harsh than AC but still warrants all my hair falling out if I didn't cold cap. I have at least an inch all over of regrowth. I'll have to look into OlyPlex. My hair looks and feels dry. I usually have light to medium brown hair but its faded to a brassy, orangy color towards the ends making it look dryer than it is, on top of needing a trim at this point! I'm jealous about your lashes. My brows and lashes are in but have another couple weeks before they are the length they were in November. I just hope they don;t all come out like a few people said they would. I guess they are on the same growth cycle now. Anyone heard of this? I really don't want to lose all my lashes again!

GoKale4320- I had no drains! My surgeons (I had four, 2 interns) my primary was a board certified breast specialists at Stanford. Had no wire guides. Savi scout is an alternative to wire localization,, a little reflector inserted into the tumor(s) to guide the surgeons..less scary and not Barb-aric! Not painful just scary like the biopsy.

My story sorry if I'm repeating this....I put some repetitive photos in too. Mostly for newbies.

All would have been very different for me surgery wise if had I done my surgery first and locally in my home town. My first two local suregeons were going to take my nipple and no plastic surgeon standing by or reconstruction. they did mention they would put in drains, I'm loving no drains! . They both made mention of taking 20-40 axillary nodes! My Stanford surgeon took 7-10 nodes.... Part of the reason I chose chemo first was the scary surgery! I know I'm lucky no mastectomy!.... please don't be mad if I'm being a whimp in comparison surgery wise. I feel for all here who may not be so lucky. My breast lift and plastic surgery was covered by ins. They also removed my port without cutting it out seperately,I believe they must've pulled it out thru my nipple incision?

We did a load of interviewing and studying before doing any treatment. I even started chemo just to get going on killing the cancer! I changed oncologists and cancer centers when I found a better fit. I basically fought getting standardized treatment the whole way thru... Had the one one chemo then started running around looking for better answers!.....I pray my margins are clear now since fewer nodes removed. I had two large palpable almond sized lymph nodes that shrunk to 1/3 the size during chemo...my breast tumor all but disappeared it was tiny but was very close up to my nipple.

I did have a plastic surgeon in addition to my breast surgeon. I had a lumpectomy and 7-10 axillary nodes removed in my armpit. I had and equal amt of breast tissue removed from my healthy breast and a full breast lift. No drains anywhere! No drains a New thing maybe?

I did a fasting mimicking diet before and after each chemo. I fasted a total of fifty days during my chemo winter. Google 'fasting before chemo and Dr Longo'. Short term Fasting may or not be good for hair, it's all about not damaging normal cells with chemo! Fasting puts cells into hibernation-slows cell division except for the cancer cells which get targeted even more agressively. I feel my side effects were reduced so much so that I was able to ski all winter. Lost weight at first ...doing five day fast mimic then 9 days of eating everything in sight. Toward the end I was gradually gaining weight in between... a couple pounds per time ..my body got used to the fasting. We all adapt!

Fast mimick is 500 cals a day of mainly veggies..almost no carbs

Adaptation to new look and new you is key!

Hugs all

E

PSS

As far as cold capping I did the hardest ACT (DDtaxol) chemo for cold caps. I lost 80 percent of my hair. I don't need a wig with the help of toppik. It's not my normal look I had a mane of think long blonde highlighted hair. Now I have a Greyish mouse troll look. Would I do cold caps again? ABSOLUTELY, I get hot flashes from chemo- pause almost hourly...and having nothing.... no scarfs etc on my head is such a relief when I get hot I start ripping things off, so a wig would just fly off me instantly...I love that I still have hair! I think it hideous though.,

I'm 4 weeks pfc and my hair stoped shedding and has started growing brownish grey baby hair. It's filling in so quick I think I'll not be need toppik very soonish!

These photos below are before and after toppik. The last three are with toppik...med blonde and brown mixed. I leave my toppik in all week until wash day. The toppik can clump.

The first one is clean hair...as we know it gets worse before wash day!

Keep in mind I wore hats, ear muffs, and scarfs and a few helmets all winter too! A big no no. I sweated and my head got hot when I skied. I needed to ski!